Adam Levy: 00:02
Hello. I’m Adam Levy, and this is Mind Matters: academia’s mental health crisis, a podcast from nature careers. In this episode, neurodiversity in research.
Establishing a career in academia comes with many hurdles. The pressure to publish, writing grant applications, teaching responsibilities, and for some researchers at all stages of their careers, there can be a host of unwritten challenges posed by the norms of the system.
For academics who are neurodivergent or struggling with their mental health, the system can be especially difficult, and today we’re speaking with two scientists about how they’ve forged their paths. The first is Charlotte Roughton. She’s a biological teaching technician at Newcastle University in the UK, and before that, she was a PhD student at the same institution.
She’s spoken out online about what it means to be neurodivergent in STEM and so I was curious to learn more about her experiences. And Charlotte was keen to emphasize that that’s just what they are, her experiences, rather than some universal truth about neurodiversity.
So to start us off, I asked Charlotte what neurodiversity is to her.
Charlotte Roughton: 01:26
So for me, neurodiversity is basically an acknowledgement that our brains all work differently. We all have our own strengths and challenges, but neurodiversity refers to many neurological differences between people (neurodivergent meaning having a brain that works differently from the majority).
There are multiple forms of this, and a lot of them do intersect. For me, personally, I am autistic. So anything that I do have to say during this interview will very much be through the lens of an autistic person.
Adam Levy: 02:03
And can you explain when you came to understand yourself as autistic and how that came about?
Charlotte Roughton: 2:10
So I was very fortunate to have been diagnosed with autism at a young age, which my family were always very accepting of and happy to provide support with.
And it was really helpful to have this explanation for why I felt so different and struggled socially. But I did find growing up, and especially my school life, really difficult.
I was very socially naive, quite vulnerable to manipulation, and I struggled to fit in. And because of this, I internalized a lot of shame surrounding being neurodivergent, and felt like I had failed at being a quotation marks “normal human being.”
I developed quite a deep-rooted resentment towards myself and my diagnosis, and it was round about this point that I started to mask, which is a term used for when autistic people will alter their behaviour in order to socially camouflage and appear as neurotypical to other people.
And it takes an enormous amount of mental load to maintain. And this was something I continued doing well into my adult life and during my undergraduate degree, which did eventually lead to burnout and mental health issues.
Adam Levy: 03:21
Could you explain maybe a little bit more about how your diagnosis and then feeling the need to mask affected your ability to study in school and also in university?
Charlotte Roughton: 03:33
So in a school environment, a big challenge that this presented was the social interaction elements.
So you know, group work, interacting with peers and teachers.
Understanding social cues, always felt to me like everyone else was playing a game, that they all knew the rules too. For instance, not engaging in small talk in the correct way can be interpreted as rudeness, and although these rules are second nature to neurotypical people, they don’t necessarily come naturally to autistic people.
And not following them often means that you’re excluded, or negative assumptions are made about your character.
And alongside this, I’m quite sensitive to certain sensory inputs, like loud noises and feeling like I’m being crowded by other people.
So this made environments like noisy classrooms really distracting and quite overwhelming. And all of these combined made it much more difficult to engage with my studies, both at school and then later in my studies at university.
Adam Levy: 04:36
Yeah, you mentioned actually having burnt out.
Can you explain what this experience was like and how much it disrupted your career course?
Charlotte Roughton: 04:46
So for me, burnout was just this all-encompassing exhaustion that I experienced, that made even the most basic functioning just feel impossible.
I do distinctly remember being in it might have been my second year at university, and I was really at my lowest point in that period of my life.
And it was exam season, and I distinctly remember I was just there in bed. I could not get myself out of bed. It was just, it was like I failed to function.
And I did end up failing one of my exams in the second year of university because of this, the exam season was really difficult, especially,
Adam Levy: 05:29
How did you manage to begin to find a path out of this?
Charlotte Roughton: 05:33
I went to my doctors and I started on medication to help deal with my symptoms of anxiety and depression that I was experiencing, but more widely in terms of dealing with my attitude towards myself and my diagnosis.
This didn’t really come until I started my Master’s degree. The pandemic happened, and I was living alone during lockdown, and this forced me to really sit with myself and my own thoughts and address some quite uncomfortable truths that I’d spent my entire life burying.
I also took to Twitter during this time to try and make connections with other people. And through this I came across online communities of fellow neurodivergent people. And it was this alongside, you know, the struggles I was having with my mental health issues, was the catalyst for me finally facing who I am head on and accepting that, yes, I’m autistic and no, it doesn’t matter how hard I try to hide it.
I can’t change that fact about myself. I can either embrace it and start actively taking care of myself. Or I can continue this unsustainable pattern of pretending it doesn’t exist and completely annihilating my health as a result.
But I do feel I eventually got to a point where I have a better understanding of myself and my needs, and I feel a lot less ashamed, or that I’m somehow less than by perceiving the world in a different way and sometimes needing support.
Adam Levy: 07:05
Can you explain a bit more what it means for you to embrace it because you explained that as the alternative to your previous way of doing things?
Charlotte Roughton: 07:15
You know, certain aspects of life are more difficult for me because I’m autistic, but that isn’t something to be ashamed of.
It has presented a lot of challenges, you know, at school and also during my time in academia.
But yes, it does come with certain strengths that I have found beneficial, both within research and in my current role as a technician.
I’m a very detail-orientated person with a structured and a logical way of thinking. So this can be really helpful when it comes to carrying out experiments, analyzing data, reviewing literature and so on.
I’m also able to hyper focus on certain topics and activities, which means I can tirelessly immerse myself in them for extended periods of time, which has been helpful for certain things, like writing my thesis alongside a full-time job.
This does, however, come with caveats in that I don’t always have a great deal of control over the what and the when of my hyperfocus.
I can also struggle to pull myself out of the hyperfocus once it starts. So it really is something I need to make use of carefully and sustainably so that my health doesn’t suffer as a result.
Adam Levy: 08:28
How have you approached sharing your autism diagnosis as you’ve gone through education and your career? What does disclosing mean to you?
Charlotte Roughton: 08:38
So this is a tricky one, because while my most recent workplaces have been aware of me being autistic, both times, they came about in quite unconventional ways.
The first came about through me posting on Twitter about me being autistic, which my supervisor read. And the second time came through me filling out a self-certification form after being off sick, and I ticked yes under the box asking whether I had a disability.
In both cases, it was the supervisor who initiated the conversation, and we then discussed my support needs from there.
I wasn’t really sure how to initiate disclosing like coming from me, so I felt quite conflicted, because I wanted to have an open and honest dialog about it, but I also feared it backfiring and having negative, incorrect assumptions made about me.
But in future, I think I would formalize the process and request a one–to-one meeting specifically to discuss it, once I feel that it’ safe to do so.
I feel like I’ve been making baby steps towards being braver about it and being more upfront about disclosing it in a professional setting.
But I think there will always be that sense of, you know, how do they feel about neurodivergent people? Do they have negative assumptions about people who are autistic?
You know, are they going to assume I’m less competent at my job and so on.
So I think that will always be a thought in the back of my mind.
Adam Levy: 10:05
Do you think there’s also a way that staff and institutions can create a better environment in which people feel safe and supported to disclose in the first place?
Charlotte Roughton: 10:16
So I think being vocal about their acceptance of neurodiversity, not just acceptance, but willingness to provide support, would really make a difference, and making it clear to students that it is a safe space for them to disclose their neurodiversity and also ensure that there actually are mechanisms in place to support them.
Adam Levy: 10:43
How do you feel about disclosing, I suppose, in a more public way, because you’ve written about your experiences with autism, you’re speaking to me now. What does it mean to you to share your experiences more widely?
Charlotte Roughton: 10:56
It means a lot to me, and it does give me a great sense of pride. I think because I spent so much of my life actively hiding it.
And knowing as well that there are these platforms now and people are talking about neurodivergence, and it is slowly becoming more and more of an accepted thing and not something that people should feel ashamed of.
Adam Levy: 11:21
Could you explain the support mechanisms that you make use of in your everyday life to kind of help you in your career?
Charlotte Roughton: 11:28
A big one for me is clear and consistent communication, for instance, making sure that meetings are scheduled with advance notice and that agendas are prepared and distributed beforehand so I know what topics of discussion I can expect to happen.
In a similar vein, it really helps when changes to plans and schedules are communicated to me with as much notice as possible as I can find last minute changes incredibly stressful.
I also ask that supervisors are clear and explicit in their instructions and expectations, as I won’t necessarily be able to read between the lines or gauge what they need from me.
And then, in terms of managing my mental health, I’ve found medication has been really helpful for my symptoms of depression and anxiety, and I have also accessed the university’s counselling service before.
And I do expect that these mental health issues will be with me for the rest of my life, but as long as I keep on top of these strategies, they feel manageable for the time being.
Adam Levy: 12:30
Now, you mentioned that during COVID lockdowns, you began to find online community, and the support through that is that something you still find support from both online and offline?
Charlotte Roughton: 12:41
Yes, so it’s been really helpful to make connections with other people who I’m still in touch with today.
For instance, some people that I’d met through them being both microbiologists and neurodivergent and we were both members of the same society, meant that when we went to the same conference, we ended up organizing disability and neurodivergent social.
And it’s really helpful to have those people there if ever I need to, you know, reach out to them to get something off my chest, and they’ll understand it in a way that a neurotypical person wouldn’t. So yeah, it absolutely is still something that I found, I find helpful to this day.
Adam Levy: 13:22
Do you have any advice for other neurodivergent people who are trying to navigate the the tricky world of research?
Charlotte Roughton: 13:30
So my biggest piece of advice for other neurodivergent people would be to find your people.
This could be through online communities or in person support groups and societies.
Be proactive and find them, because they are out there. And they are a wealth of information and support.
My biggest mistake growing up was deliberately isolating myself from the neurodivergent community. But after meeting and commiserating with fellow autistic people, I realized that there were people out there who have also lived it and can understand me in a way that neurotypical people can’t, and this has really done wonders for my self-esteem and my confidence in myself.
So I would absolutely recommend other neurodivergent people do that.
Adam Levy: 14:15
What would you like to see from academic institutions and from lab heads in order to make better accommodations for neurodivergent people.
Charlotte Roughton: 14:26
For starters, I think all PIs should have access to and dedicate the time to completing training on neurodiversity.
I think within the first term of supervision, they should aim to discuss communication styles and working approaches with the student and find an approach that suits the needs of the student.
For instance, you know, how often can the student expect to meet to discuss their project?
And the PI should also aim to clearly communicate their expectations.
An autistic student may struggle to read between the lines or pick up on hints.
And also being aware that autistic students do have an increased likelihood of experiencing burnout and mental health issues. So there is a greater need there to ensure that a healthy work life balance is maintained.
And more widely, higher education institutions can support their neurodivergent staff and students by embedding neurodiversity training, not just for new supervisors, but there’s an opportunity for continued professional development.
Specific examples of tailored support can include the provision of assistive technology, such as noise cancelling headphones, text-to-speech software.
They could offer flexible hours and remote work options where this is feasible. And also make sure that any mental health and wellbeing services that they offer are well informed about neurodiversity, and therefore they can offer the appropriate support.
Now this is far from an exhaustive list. There are much more that I could add to this.
And I would like to reiterate, when it comes to supporting neurodivergent people in your life, it’s always better to ask and to not make assumptions about what someone may need or what they might have difficulty with.
Adam Levy: 16:21
That was Charlotte Rowton. Charlotte mentioned that the challenges she faced led to burnout, and in fact, will be returning to burnout in academia in a later episode in the series,
Unidentified source quote: 16:32
It was a really bad situation. I knew something had to change, because this was just not sustainable.
Adam Levy: 16:37
But now I wanted to speak with another researcher about her experiences. Michelle Kimple is a professor of medicine at the University of Wisconsin Madison in the United States. Some of Michelle’s experiences might sound pretty typical for an academic of her seniority.
Michelle Kimple: 16:54
Honestly, if I had to do an experiment again, I’m not sure that I could. I don’t know where anything in my lab is anymore, and my people are great at this point. They’re more experts in the actual lab techniques than I am.
Adam Levy: 17:07
But her career has also been marked by some profoundly personal experiences stemming both from her mental health and neurodivergence. Despite the stigma that can surround these issues, she’s been extremely open about what she’s been through, even penning a column for Nature’s careers section titled How my bipolar diagnosis changed my scientific career. And so that’s precisely what I wanted to learn more about. We started out by talking about whether Michelle saw differences between her and her peers when she was starting out in academia.
Michelle Kimple 17:43
I definitely felt that even from elementary school on, before I was diagnosed with bipolar disorder and ADHD, I sort of thought of myself as sort of meandering through life.
It was really hard for me to focus and follow through on tasks.
So it took me a lot longer to complete things than other people did.
But certain periods of my life I could put in what I would term 300% effort. So I actually managed to be really successful in school and in my career, up until I was going up for a promotion from assistant professor to associate professor, which was an incredibly stressful time in my life.
I was also writing a really critical grant application that would sort of determine a little bit of the future of my research programme.
And I also had a lot of personal life stress. And that’s when my bipolar disorder symptoms really got exacerbated, and I realized that something was wrong, and that sort of inspired me to to make an appointment with psychiatry and get a proper diagnosis.
Adam Levy: 18:58
Can I ask, for people who maybe are less familiar with bipolar disorder, what do you mean when you say the symptoms associated with it were kind of more exacerbated in this time?
Michelle Kimple: 19:09
So with bipolar disorder, and I have bipolar one, which means that I spend most of my time in hypomania, sort of a charismatic, ego-driven state that actually was well aligned with what I needed to do as an assistant professor, giving talks, saying yes to every opportunity that came my way to sort of advance my career.
But at a certain point, with all of that stress, around that time I was being promoted, I spiralled up into mania, which is a completely dysfunctional state.
And I actually started developing delusions of grandeur and psychoses.
I became really ultra-spiritual, which is completely the opposite of how. I’ve been my entire life.
But you can only stay in that state for so long. And I sort of had a shock in my life that sort of made me realize that these thoughts and behaviours are not normal, and it’s probably just a symptom of undiagnosed bipolar disorder.
Adam Levy: 20:19
So how was it then, when you ended up seeking diagnosis and having that confirmation of bipolar disorder, what was your reaction?
Michelle Kimple: 20:27
I mean, I was honestly relieved, because I believed that that was a condition that I had, and it sort of explained my entire life to me, and it was just really reassuring to talk with a psychiatrist and have her agree with my diagnosis and then also suggest that I might also have ADHD, which is actually really common to have with bipolar disorder, especially in women.
So I wasn’t sort of disappointed or upset at all with the diagnosis. I was relieved, because I knew there were medications that could control it.
Adam Levy: 21:04
And was that something, is that, something that you’ve experienced, that medications have been helpful?
Michelle Kimple: 21:11
Oh my gosh, they’ve been life changing. I’ve told people before, once I was properly medicated for bipolar disorder and ADHD, it’s like two switches in my brains flipped. And I feel like now I must be experiencing what a neurotypical person experiences.
I work regular hours. I’m able to stay on top of everything. I’m really excited about the work that I do, and I get a lot of professional satisfaction, and that was sort of hard to do when I was struggling throughout my career.
So I would say for people who have bipolar disorder and are worried about medications changing them or making them less creative, which is a really common misconception.
That I’m actually more creative and I feel more like myself when I’m on medications than before I was.
Adam Levy: 22:09
Now, you’ve previously described being out with your bipolar and ADHD diagnoses. Is this something you kind of decided from the very beginning that this is something you’d be very candid about and share with the people in your institution.
Michelle Kimple: 22:25
I mean, honestly, in the beginning, I was still cycling between mania and depression, and I really couldn’t hide it, and so everybody in my circle already knew I broke down in tears in my division chief’s office.
And so basically the whole story came out, and sort of after that, after all my friends and my important colleagues and supervisors knew I thought, I haven’t suffered any professional repercussions from this, so nothing should really stop me from just being completely out.
And for a while, I posted on Twitter and Facebook a lot about, sort of, my bipolar disorder diagnosis and how it affected my life and my career, and which sort of got me on this path where I really want to incorporate study of mental disorders, particularly in academics, and how it impacts their career development and advancement.
As a woman myself, I feel like there’s still a lot of stigma, and so that’s why I really want to advocate, particularly for women in science, especially because they tend to be under diagnosed.
Adam Levy: 23:44
Is that stigma, something you personally have experienced being so so open and vocal about your diagnosis?
Michelle Kimple: 23:50
No, I haven’t received any negative feedback from anybody. That’s not to say that there hasn’t been. It’s just that I haven’t received anything directly.
But definitely when I was posting more about my disorder on social media, I received a lot of comments from other people saying that disclosing your diagnosis was the worst thing that you could do, and that you should really try to keep it hidden.
And and that really sort of disappointed me, and sort of inspired me to continue to do this work and to… I published a column in the Nature Careers section about my bipolar disorder diagnosis affected my scientific career.
First, I want other people to know they’re not alone. But also I want departments and institutions to see that a person with bipolar disorder can be incredibly creative and support the strategic missions of the departments and the institutions, and that these are really valuable people to um. Support and help advance into more leadership positions.
Adam Levy: 25:00
And now, speaking of your department and your institution, have you been able to seek support and accommodations for both your bipolar and ADHD diagnoses?
Michelle Kimple: 25:18
Yes, I’ve been extremely fortunate. This should really be the case everywhere. Yeah, my department was incredibly supportive.
My reasonable accommodations include having the 10 hours of dedicated administrative assistance to help me keep up with sort of the mundane tasks that distract me from the larger aspects of my work, like scheduling meetings and creating doodle polls and things like that.
So that’s been a game changer for me. These little tasks were causing me a lot of stress. It has really been critical for me to be able to stay in my job and advance in my career path.
Adam Levy: 26:05
Now in the piece that you wrote for Nature Careers, you discussed the fact that it is possible to seek certain accommodations without fully being out and fully disclosing to kind of everyone in the department the situation.
Could you explain how, at least in certain circumstances, people can navigate that?
Michelle Kimple: 26:23
I can at least tell you about, sort of the situation in the in the US. You don’t have to disclose your diagnosis to anyone.
The first thing to do would be to talk with a disability coordinator, basically just tell them the story and what challenges you’’e experiencing because of your disability, and what sorts of things might help you to be successful and in a typical circumstance.
And so there is a way to go about obtaining reasonable accommodations without having to disclose anything to your supervisors or your colleagues?
Adam Levy: 27:04
Do you have any thoughts or tips for other academics who are going through a similar journey, who maybe have received a big diagnosis and are trying to work out how to navigate their institution with it?
Michelle Kimple: 27:18
So, that’s actually been something that’s been incredibly fulfilling is that I had so many people contact me just saying that they were so inspired by my piece, and didn’t realize that there were other people out there like them.
And so that’s actually been incredibly personally and professionally satisfying. So yes, I’ve definitely been able to serve as sort of a mentor and provide some emotional support to other individuals that are going through things similar to what I have been going through.
Adam Levy: 27:55
Michelle Kimple there.
Often when discussing mental health in academia, the focus can be on the challenges that researchers face when they’re setting out, getting through a PhD and trying to establish career security.
But as Michelle’s story makes clear, these challenges can have profound impacts on faculty too, and that’s exactly what the next episode in our series will focus on.
Unidentified source quote: 28:21
You go from a day where your primary goals and objectives are to do excellent science and publish excellent papers to a position where you have to be an excellent teacher, to be an excellent manager, to be a great accountant, to learn how to mentor and guide people and provide them with mental health support.
All of the sudden, you’re expected to do all of these, and you’re expected to do all without any complaint or asking for support.
Adam Levy: 28:49
Until then, this has been Mind Matters: academia’s mental health crisis, a podcast from Nature Careers. Thanks for listening. I’m Adam Levy.
